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Catastrophic news: Swedish ME/FM biomedical clinic Gottfries to be replaced with BPS for MUS

mango

Senior Member
Messages
905
And can anyone explain, please, what (S) and (V) said about Point 4? Thank you.

do you mean this part?

Janette Olsson (S) och Birgit Lövkvist (V)
Punkt 4 ska formuleras enligt följande:
”Det ska skyndsamt utreda om vård av MOS kan bedrivas i egen regi fr 1/12-16.
Regeringen har aviserat att primärvården ska anpassa sin verksamhet för personer med
psykisk ohälsa och långvarig smärta.
Utredningen bör också se hur detta gynnar egen regi.
Regeringen har också aviserat stimulansmedel för att primärvården ska kunna erbjuda
adekvat vård och behandling för gruppen.”

ETA: i'm exhausted, so this will be a quick and sloppy translation... sorry.

Point 4 should be phrased like this:
"An investigation into whether care for MUS can be run in-house from Dec 1 2016 should be rushed.
The government has stated that the primary healthcare centers shall adapt their services for people with mental health problems and chronic pain.
The investigation should also look into how this benefits in-house services.
The government has also stated that there are monetary incentives available, to make it possible for the primary healthcare to offer adequate care and treatments for the group."
 
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sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
According to the minutes of the meeting, this decision was based on "Dialogues with the current service provider and a legal expert. Information and criticism from the Social Insurance Agency (Försäkringskassan), research, medical guidelines, and national and international guidelines have also been considered."

There doesn't seem to be any mention of patients in the consultation. That sounds like grounds for a challenge.
 

mango

Senior Member
Messages
905
How about starting a campaign to reopen it? An online one, I mean.

yes, it's something that has been discussed as a possibility. the first step though, will be to try and come to a consensus agreement with the politicians.

a petition is being drafted, but how and if it will be used depends on the result of the negotiations...
 

mango

Senior Member
Messages
905
@mangoCould you be forced to go there if you're on benefits? (no idea how the system works in Sweden)

being forced to do CBT/GET it's already the case today for many ME-patients in Sweden, sadly... i live in a different part of the country, nowhere near the Gottfries clinic. i was forced to do CBT/GET several years ago, under the threat of losing my right to sickness benefit indefinitely. i could have refused, but then they would have written "uncooperative" in my papers and all doors would have been closed, including welfare benefits...

well, the CBT/GET didn't work and only made me much much worse (from moderate to severely ill). they still denied me sickness benefit/compensation for many years after that,...had to fight the social insurance agency in court, repeatedly and for many years (9 years in total).

the BPS view has been around for a very long time here, but this is the first time that i've seen the TERM-model being recommended in official papers. that scares the hell out of me...

the other public healthcare biomedical clinic that i mentioned in the original post, Stora Sköndal, is brand new. it was opened only a couple of months ago. we were all so happy and relieved, grateful for such a firm and clear step in the biomedical direction. so many people worked so hard for many years to make it happen. we're hoping it will set a great example for new strictly biomedical specialist clinics to follow all over the country. and then this happens... absolutely devastating :cry:
 
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Effi

Senior Member
Messages
1,496
Location
Europe
well, the CBT/GET didn't work and only made me much much worse (from moderate to severely ill). they still denied me sickness benefit/compensation for many years after that,...had to fight them in court, repeatedly and for many years (9 years in total).
I'm so sorry to hear about what you went through, @mango ... It makes me so mad, how they can abuse us, make us sicker, and still get away with it. It's not fair. :(
 
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mango

Senior Member
Messages
905
Are there public records of how each person voted in this matter?

@Asa, i don't know. the documents i've been able to get my hands on so far are the protocol of the meeting (30 september, linked above), [can't find the word...] beslutsunderlaget (the document the politicians were given by the clerks(?) to help them decide: a summary of the issue, a detailed description, and the proposal/suggested action plan), and the IVO reply from march 2015.
 

mango

Senior Member
Messages
905
also, a really warm and massive thank you to each and every one of you for your very kind and supportive comments! :heart: it really means a lot to so many of us :hug:

i'm sure there are many swedish PWME lurking here on PR, wishing they too could take part in the conversations... i suspect the combo brain fog + having to write in a language one isn't very familiar with, is why they haven't already joined in.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
also, a really warm and massive thank you to each and every one of you for your very kind and supportive comments! :heart: it really means a lot to so many of us :hug:

i'm sure there are many swedish PWME lurking here on PR, wishing they too could take part in the conversations... i suspect the combo brain fog + having to write in a language one isn't very familiar with, is why they haven't already joined in.

Very sorry to hear your own awful story, mango. It's all just so awful.

Why not start a thread in Swedish for your fellow Swedes? I see no reason at all why you shouldn't.

Is there, @Sushi (picking a mod at random! :))?
 

mango

Senior Member
Messages
905
Query - What is the TERM model?

I'm going to regret this.

yes, keep the brain soap nearby... you might quite possibly wish you could un-see this... (i sure do!!)

it's a modified (by Per Fink & co in denmark) version of the original The Extended Reattribution and Management Model.

if you speak danish, this is a great (critical) website: http://index.funktionellidelse.dk/ maybe google translate can help you?

official website for forskningsklinikken for funktionelle lidelser (FFL), fink's research clinic: http://funktionellelidelser.dk/

here's their official guidelines for health professionals (in danish): http://vejledninger.dsam.dk/funktionellelidelser/

in short it's about stopping medical investigations, tests and treatments (in order to "avoid encouraging false illness beliefs" and because it "can cause harm"),... replacing them with CBT, GET, mindfulness and possibly anti-depressants, all with a generous helping of manipulation and control :depressed::mad::vomit:

Here are a few of the recommendations from the FFL clinical guidelines (sloppily translated):
* Deny the patient further investigations and tests [unless there are objective findings or a well definied clinical picture]
* Try to make sure you’re the patient’s only doctor
* Try to create an alliance with the patient’s family and relatives
* Cut down on medication and other treatments [ETA: in danish "sanere", more like "remove", maybe?]
* As much as possible, try to avoid giving the patient sick leave from work
* Consider anti-depressants
* Choose medication that can be serum monitored
* Keep a stoic attitude towards complaints about side-effects from medications

Karina Hansen is an immensely tragic but telling example of this method at its absolute worst...
 
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mango

Senior Member
Messages
905
Perhaps a Swedish group would be better?

thanks for the suggestion, @Sasha and @Sushi! :)

if anybody would be interested in this, please let me know.
om det är nån som är intresserad av det kan ni väl skicka mig ett PM eller svara här i tråden?

or, alternatively, RME runs an excellent (members only) facebook group. i highly recommend it!
 

Effi

Senior Member
Messages
1,496
Location
Europe
in short it's about stopping medical investigations, tests and treatments (in order to "avoid encouraging false illness beliefs"),... replacing them with CBT, GET, mindfulness and possibly anti-depressants, all with a generous helping of manipulation and control :depressed::mad::vomit:

Here are a few of the recommendations from the FFL clinical guidelines (sloppily translated):
* Deny the patient further investigations and tests [unless there are objective findings or a well definied clinical picture]
* Try to make sure you’re the patient’s only doctor
* Try to create an alliance with the patient’s family and relatives
* Cut down on medication and other treatments
* As much as possible, try to avoid giving the patient sick leave from work
* Consider anti-depressants
* Choose medication that can be serum monitored
* Keep a stoic attitude towards complaints about side-effects from medications

Karina Hansen is an immensely tragic but telling example of this method at its absolute worst...
omg that is just beyond evil!!! :(:mad::eek::jaw-drop::bang-head: I'm lost for words tbh...
 

mango

Senior Member
Messages
905
a bit more about the TERM-model. here are a few "interesting" quotes from the guidelines (again, sloppily translated -- i actually don't speak danish, but written danish is quite similar to swedish so i can understand most of it reasonably well):

“HVOR SIKKER KAN JEG VÆRE PÅ, AT DER ER TALE OM EN FUNKTIONEL LIDELSE?
Hos patienter, som henvender sig med mere end 6 legemlige symptomer for kvinder og mindst 4 legemlige symptomer for mænd, vil tilstanden i 75 % af henvendelserne være uden biomedicinsk forklaring.“

HOW SURE CAN I BE THAT IT'S A FUNCTIONAL DISORDER?
In 75% of the cases where the patients are suffering from more than 6 physical symptoms for women and at least 4 physical symptoms for men, the condition will lack a biomedical explanation.

Overvej, om nytilkomne symptomer eller en forværring er udtryk for emotionel kommunikation
frem for tegn på en ny lidelse

Consider if new symptoms or a worsening are expressions of emotional communication rather than a new ailment.

HVOR STOR ER RISIKOEN FOR AT FORSINKE DIAGNOSTIKKEN AF ANDEN ALVORLIG SYGDOM?
[...] Ved persisterende funktionelle symptomer tyder flere undersøgelser på, at diagnosen af en organisk lidelse kun forsinkes i under 4 % af tilfældene.

HOW BIG IS THE RISK OF DELAYING A DIAGNOSIS OF ANOTHER SERIOUS ILLNESS?
[...] Several studies about persistent physical symptoms suggest that the diagnosis of an organic illness is only delayed in less than 4% of the cases.
 
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Aurator

Senior Member
Messages
625
* Try to make sure you’re the patient’s only doctor
* Try to create an alliance with the patient’s family and relatives
* Cut down on medication and other treatments [ETA: in danish "sanere", more like "remove", maybe?]
* As much as possible, try to avoid giving the patient sick leave from work
* Consider anti-depressants
* Choose medication that can be serum monitored
* Keep a stoic attitude towards complaints about side-effects from medications
The message seems to be: these patients are non compos mentis and should be treated accordingly. I wouldn't be surprised if some of these infringe patients' basic rights - points one and four particularly. I'd be contacting the ME charities in your country and seeking to clarify the legal position of all this.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Those TERM steps are absolutely chilling. They read like the protocols of some destructive brainwashing cult.

I'm not sure which is the most disturbing part of that list, but

* Try to create an alliance with the patient’s family and relatives
* Try to make sure you’re the patient’s only doctor

are genuinely scary in their implications. This is an instruction manual for isolating and controlling someone, leaving them with nowhere to turn. I don't think 'evil' is too strong a word.
 
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